Removing Barriers – Aaron and Ryan’s Story
Palm Beach Country, Florida
When we first learned about Marelyn Salgado, she needed financial assistance. Her twin boys, Aaron and Ryan, were both diagnosed with sickle cell disease and scheduled to receive a bone marrow transplant.
This is what we do. The Icla da Silva Foundation removes barriers for patients who require a bone marrow or cord blood transplant. For patients demonstrating financial need, we provide grants during treatment.
But when we met, we discovered that this was their second transplant. The boys had already received a stem cell transplant from their mom last year. Due to complications, they needed another one.
A Difficult Situation
As a single mom, Marelyn has been unable to work while acting as the caregiver for two 8-year-old boys with a blood disease. She has been without income for an extended period.
She was in a very difficult situation.
Marelyn was alone, afraid, and unsure of the outcome. With sickle cell disease, the boys have lived in pain for years. They had already been through treatment and transplant, and now they needed to do it all over again.
We were happy to provide the family with a grant while in treatment. We helped with housing, transportation, and support for meals. But, Marelyn needed more. She needed emotional support, someone to talk with who could understand her challenges. She needed a shoulder to lean on.
We have been speaking with Marelyn 2-3 times a week in the months before the boys’ second transplant. Days, evenings, and weekends; it didn’t matter. We wanted to help her get through this ordeal and understand that she is not alone.
At the very least, we wanted to provide her with hope.
The boys have received their second bone marrow transplant. Once again, their mom was the donor.
We wish them a full recovery and a chance to just be boys.
We want Marelyn to have high hopes for their future.
Thanks for reading. You can help support more patient families like Marelyn, Aaron, and Ryan with a donation.
Together, we will continue to make a difference in patients’ lives.
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Written by: Bret ItskowitchFinding a Cure for Valery
Removing barriers so a little girl can receive her life-saving treatment.
Valery Hernandez is a 9-year-old girl from the Dominican Republic. She was diagnosed with acute lymphoblastic leukemia in 2019. After two years of chemotherapy at the Instituto de Oncologia in the Dominican Republic, her cancer finally went into remission.
But the leukemia was so aggressive that it returned after only five months.
While a bone marrow transplant was her only option, the hospital in DR does not perform pediatric bone marrow transplants.
The medical team there referred her to the Icla da Silva Foundation.
We helped identify a transplant center in the U.S., Nemours Children’s Health, for her bone marrow transplant. After reviewing her case, a study for CAR T-cell therapy was identified at the National Institute of Health (NIH).
A team of doctors were interested in Valery’s case for a clinical trial.
What is CAR T-Cell Therapy?
CAR T-cell therapy is a treatment in which a patient’s T cells (a type of immune system cell) are changed in the laboratory so they attack cancer cells. T cells are taken from a patient’s blood. The gene for a special receptor, which binds to a specific protein on the patient’s cancer cells, is added to the T cells in the laboratory. This receptor is called a chimeric antigen receptor (CAR). A large number of these CAR T-cells are grown in the laboratory and given to the patient by infusion.
CAR T-cell therapies, and other antibody-based therapies, are used to target surface proteins found on leukemia cells. The goal is to improve outcomes for patients with blood cancers that do not respond to chemotherapy.
The family cried with joy after learning about the clinical trial.
CAR T-cell therapy, followed by a bone marrow transplant, was the best opportunity for long-term survival.
There were many barriers we helped remove in order to give Valery her chance at survival:
- Identify a Transplant Center in the U.S. for her bone marrow transplant
- Petition to get her accepted for the clinical trial at NIH in Bethesda, MD
- Support her application for a temporary humanitarian visa
- Arrange accommodations at NIH
- Arrange travel for the donor to transplant her blood stem cells
The first phase of the treatment, the CAR T-Cell therapy, was a success.
The Next Phase
Valery is doing great! She has been transferred to Nemours Children’s Health for her bone marrow transplant, which will happen in a few weeks.
The Foundation assisted with the arrival of her donor, Valery’s younger sister.
She is a perfect match.
We have been in constant contact with the family and continue to support them with logistical and emotional needs on their journey to a cure.
We are grateful for the amazing medical teams that are caring for Valery and her family.
Please consider making a donation and help us remove barriers for more patients like Valery.
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Written by: Bret ItskowitchHelping a Patient’s Mom Fulfill an Urgent Need
The Icla da Silva Foundation removes barriers to treatment for bone marrow patients. Some of these barriers may seem less consequential, but to the mother of a patient with blood cancer, any support can make a world of difference.
We were recently introduced to Josephine and her 13-year-old son Nathaniel by a social worker at the Children’s Hospital at Montefiore. Nathaniel was diagnosed with acute lymphocytic leukemia (ALL), a cancer of the blood and bone marrow. His only cure was a matching bine marrow transplant.
Fortunately for Nathaniel, his little brother was identified as a matching donor and he is receiving a transplant.
But his mother Josephine had another barrier. As a single mom with two children, she needed to afford someone to watch her younger child so she could be with Nathaniel during his treatment after the transplant.
She couldn’t be in two places at once. This was her barrier.
The IclaCares program was able to help a mother fulfill an urgent need. We were able to remove her barrier in less than a week.
Our support enabled Josephine to place one of her challenges on the back burner, so she could focus on her son while he received his bone marrow transplant and treatment.
We were able to help Josephine and her family thanks to the support of our donors.
Please consider making a donation to help us support more patient families with urgent needs. Even a small donation can remove a barrier that isn’t often considered.
The Icla da Silva Foundation appreciates your support. We know patients like Josephine are extremely grateful.
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Written by: Bret Itskowitch